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Exploring barriers and enablers of self‐management behaviours in patients with diabetic foot ulcers: A qualitative study from the perceptions of patients, caregivers, and healthcare professionals in primary care

2023; Wiley; Volume: 20; Issue: 7 Linguagem: Inglês

10.1111/iwj.14153

1742-481X

Xiaoli Zhu, Eng Sing Lee, Phoebe X. H. Lim, Yee Chui Chen, Frederick H. F. Chan, Konstadina Griva,

Pressure Ulcer Prevention and Management

Diabetes mellitus (DM) is a serious threat to global health and diabetic foot ulcers (DFU) remains one of the most common complications of DM1 affecting around 20 million people annually.2 DFUs are complex to treat, take months or years to heal, and the recurrence rates remain high up to 40% within 1 year of healing.3 People with DFUs are at risk of prolonged healing times and hospitalisation, reduced quality of life4, 5 and higher five-year mortality rates.3 Moreover, DFU is a causal factor for up to 85% of patients with diabetes who subsequently undergo lower extremity amputation3, 6 and is a leading cause of global disability.2 Singapore has the highest rate of diabetic lower extremity amputation (DLEA) in the world7 because of DFU and the trend is increasing.8 Additionally, DFU is a substantial clinical and economic burden to health systems in Singapore with escalating healthcare costs corresponding to more proximal amputation levels and high re-admission rates.9 Thus, understanding barriers to managing DFU is vital for improving patient care. The vast majority of DFUs and DLEAs are preventable10 and failures or delays in timely treatment or self-care especially could explain the increasing trends. Foot self-care is pivotal to preventing DFU recurrence and reducing the rates of DLEAs,3, 11-13 but it is often ignored.14, 15 While important, education about foot care alone is often insufficient in improving self-care and preventing DFU recurrence.16, 17 Patient-related cognitive and emotional factors, especially illness perceptions, are key determinants in facilitating or hindering appropriate foot self-care behaviours.18, 19 A qualitative meta-synthesis review found that patients with DFU often presented poor understanding and low perceived risk for DFU, low perceived control over DFU occurrence, and inconsistent engagement in foot self-care.18 Misperceptions of DFU arise when patients have poor awareness of DFU presentation, causes of DFU and the consequences of poorly-managed DFU.18 Holding beliefs about diabetes, such as low control or influence on ulceration, are associated with poor engagement with self-care in DFU,20 and has also been shown to adversely affect survival.21 A lack of perceived control in preventing further DFUs is related to the emotional and behavioural responses of individuals living with the threat of re-ulceration.22 Patients' perceptions of managing DFU may also differ from the standard of care guideline recommendations despite the perceived benefits of self-management. Besides patient-related factors, system-level or healthcare provider (HCP)-related factors are equally important. Empathetic patient-provider communication characterised by sensitivity and rapport promotes openness and adherence to self-care while insensitive communication has been found to increase patient dissatisfaction and lead to worse clinical outcomes.18 There is substantial discordance between patient and practitioner's impressions and expectations of foot self-care and significant gaps and barriers in the way foot-care recommendations are communicated to patients with diabetes in the clinical environment.23 Prior studies, however, only included HCPs in tertiary care settings and focused on patients with diabetes without foot ulcer.24, 25 Patients with DFU are predominantly cared for in primary care settings. It is therefore important to consider the needs and perspectives of primary care HCPs in DFU care in order to address barriers and improve patient adherence to recommended foot self-care practices. Studies to understand DFU recurrence are relatively few and focused almost exclusively on patients' perspectives.18 Less emphasis has been placed on understanding the needs of family caregivers who are often involved in the DFU treatment process. Family caregivers support patients with DM self-care by administering treatment and rendering practical assistance (such as wound care or transport), promoting/encouraging patients' self-care and foot care behaviours through reminders and monitoring, synthesising, and communicating health information, and giving emotional support.26-28 The diverse and central roles that caregivers play in the patients' care underlie the complex and reciprocal influence between patients and caregivers. However, the perspectives of family caregivers and the interdependence of the two partners (patient and caregiver) are not well understood in DFU care. Previous studies to understand the relationship between illness/health perception and DFU care and self-management behaviours mostly used quantitative methods.20, 21, 29 Qualitative research is well placed to understand how individuals experience and respond to particular situations and conditions regarding health and illness.30 However, there is a paucity of qualitative research on illness perceptions and the interplay of individuals (patient-caregiver dyads) and system-level and HCPs factors regarding self-care behaviour in improving DFU care in primary care. Existing studies largely focused on patients with diabetes31-37 rather than those with active DFUs. The findings from these studies cannot be extrapolated to patients with DFU as the perceptions of foot self-care behaviour may differ between patients with and without prior DFU. The interdependent perceptions in self-management of patients, their family caregivers, and HCPs are not well understood in DFU care. Several studies only reported the barriers to foot self-management from HCPs' perspectives alone.24, 38, 39 The perceptions of self-management behaviour among patients, caregivers, and HCPs may vary significantly. This study aimed to understand the barriers and enablers of managing DFU from the perceptions of various stakeholders in order to identify the potentially modifiable factors associated with suboptimal DFU care. These modifiable individual and/or dyadic factors could inform the development of tailored interventions or refinement of existing diabetes services in primary care. This study used a descriptive qualitative research design. We conducted individual interviews with patients with active DFU and their caregivers. We also conducted focus group discussions (FGDs) with HCPs who were involved in DFU care in the primary care setting. Ethical approval for this study was provided by The National Healthcare Group Domain Specific Review Board ethics committee (Ref No. 2021/01074) and the Nanyang Technological University Institutional Review Board (Ref No. NTU IRB-2022-338). Purposeful maximum variation sampling was used to identify participants for the study from seven general primary care clinics between April and July 2022. These seven clinics serve the population in the central and northern parts of Singapore. We purposively sampled patients with active DFU to include individuals of different ages, genders, ethnicities, educational backgrounds, time since diagnoses, and other clinical baselines. Caregivers were sampled including spouses and children to gain an understanding of the barriers to DFU care from a wide variety of angles and provide a holistic view of DFU care. HCPs selected were those who were directly involved in the care of patients with DFU while trying to achieve a diverse representation among the various professions, for example, family physician, wound nurse, and podiatrist. Patients and caregivers were recruited subject to the following inclusion criteria: age 21 years old and above; with active DFU receiving care in primary care settings (patients only) or providing/supporting care for a person with DFU (caregivers only), conversant in either English or Chinese. Those unable to give consent because of cognitive or psychiatric diagnoses or only fluent in dialects were excluded. Inclusion criteria for HCPs were those providing care or consultation to patients with DFU at the primary care clinics for at least 6 months. Members of the research team and HCPs who do not provide care for DFU (eg, pharmacists and laboratory technicians) were excluded. Three interview guides were developed for the three stakeholder groups based on relevant literature and expert inputs (see Appendix A). They comprised non-directive, open-ended questions on the following topics: perceptions and experiences of DFU, understanding DFU treatment, challenges/concerns, emotions regarding DFU, needs/resources, and patient's behavioural responses. The interview questions were pilot tested on one participant of each group prior to the actual interviews. Questions and prompts were refined iteratively to enable topics that have not been previously identified to be pursued in subsequent interviews. Informed consent was obtained prior to data collection. The face-to-face individual interviews were conducted in a private consultation room within the patient participant's primary clinic for DFU treatment by one interviewer who had prior experience in qualitative methodology and was effective in conducting semi-structured interviews in both English and Mandarin. Each interview lasted between 35 and 60 min with an average time of 45 min. Participants' sociodemographic and clinical characteristics were documented. Recruitment for individual interviews was stopped upon thematic saturation. Thematic saturation was accomplished when themes and subcategories in the data became repetitive and redundant such that no new information could be gathered by further data collection. Two virtual FGDs (up to 90 min each) were conducted in English with two different groups of HCPs using a flexible topic guide with prompts. The zoom videoconferencing platform was used and FGDs were led by two facilitators: a senior researcher (KG) who has considerable expertise in qualitative methodologies and an HCP who has wound care experience and prior qualitative health services research. There was no prior relationship between the interviewers and interviewees for both individual interviews and FGDs. Field memos were kept during interviews and FGDs to record situations, ambience, and non-verbal communications, as well as the interviewer's thoughts, analytical notes, and any potential biases. Care was taken to clarify points raised by all participants during each interview and verbal verification with each participant on the main points that the participants had shared during the interviews. Each interview and FGD was transcribed verbatim. The accuracy of the transcripts and translations (from Chinese to English) were verified by comparing them against the recordings. Transcripts were not returned to the participants for comments. Data from transcripts were analysed discursively using reflexive thematic analysis40 and dyadic analysis41 and by exploring multiple perspectives on single events, rather than a single account. The analysis first took place at an individual level, and then at a dyadic level. Individual analyses are descriptive, moving to interpretive according to reflexive thematic and six-phase analytical process (ie, familiarisation with the data, generating initial codes/themes, reviewing/defining/naming themes, and producing report)42 as a set of guidelines, rather than rules, that were applied in a flexible manner to fit the data and the research questions.40 Dyadic codes/summaries were created based on the codes/summaries for the individual pairs on how each pair addressed a particular problem. Further codes were developed from the dyadic analysis that reflected the pairs' experiences and needs rather than individual experiences.43 All themes emanating from transcripts/codes/summaries were identified through both an inductive and iterative process. Data analysis began with reading and achieving familiarity with the transcripts for pre-analytical understanding. Next, the transcripts were coded line-by-line inductively and deductively to ensure important aspects of the data were not missed, while efficiently assigning codes using pre-established codes derived from the Social Ecological Model (SEM) framework.44 The SEM is a theory-based framework for understanding the multifaceted and interactive effects of personal and environmental factors related to behaviours.44 SEM is used as a foundation for planning and understanding the determinants of self-management behaviours in patients with diabetes.45, 46 Current evidence reveals that the social impact, family, and health system factors of DFU are important factors for the management and prevention of diabetic foot diseases.26, 47-49 Hence, the SEM framework was used to deductively map barriers and enablers of foot self-care behaviour across multiple levels of the healthcare system, such as individual, healthcare system, relational, and community social-cultural levels. The rationale for this framework application was to provide us with a robust platform to enable further exploration of factors that influence the adoption of the findings across micro (individual), meso (healthcare system), and macro (relational and social-cultural) levels. The researcher is a Senior Wound Nurse Clinician who has been largely involved in the treatment of patients with DFU within the public health primary care sector in Singapore and deals with complex cases of individuals with DFU in the healthcare cluster. The researcher's clinical experiences allow her reflective and thoughtful engagement with the data and the analytic process40 to identify the barriers to DFU care and potentially modifiable targets for care intervention. Rigour was ensured through attention to study credibility, confirmability and dependability, and transferability.50 Credibility was supported by the fact that the principal investigator (ZX) is a wound care nurse specialist and has long-term ongoing interactions and practical experience in caring for patients with DFU. She is thus familiar with issues faced by patients and their care processes. Additionally, the other researchers had prolonged engagement with the topic and used reflexive thematic data analyses. Regular study team debriefing was also conducted to improve the data analysis process. Confirmability was enhanced by the continual documentation of field notes and verification of transcripts and findings by the researchers. Dependability was achieved by having team members (ZX and PL) participate in the analysis process and identify similarities to enhance findings. Any disagreements were resolved with a third person until a consensus was reached. Transferability was supported through a detailed description of the study participants and the use of verbatim quotes to support themes. The findings are reported according to the consolidated criteria for reporting qualitative research (COREQ) guidelines.51 Twenty-eight individuals participated in the study including fifteen patients with active DFU, five family caregivers, and eight HCPs who consisted of three senior family physicians, four wound care nurses, and one podiatrist. Five eligible patients declined to participate in the interview because of work/personal commitments after wound care in the clinic. No one dropped out of the study after the interviews were completed. The characteristics and sociodemographic information of all the participants are presented in Tables 1–3. Of the fifteen patient participants, the average age was 64.5 years; the average duration of diabetes was 22.7 years; the average duration of DFU was 6.5 months. All patient participants had a history of previous DFU, and up to 80.0% of them had a history of previous amputation. Toe ulcers made up 66.7% while plantar ulcers constituted 33.3% of the sample. The percentages of neuropathic DFU, neuro-ischaemic DFU, and ischaemic DFU were 60.0%, 33.3%, and 6.7% respectively. The codes derived were organised into three interlinked superordinate themes based on the SEM. The first theme was those factors related to the barriers and enablers around the individual micro level, followed by the healthcare system meso level, and the macro level related to wider relational and community/society. The three superordinate themes were individual perceptions, healthcare system influences, and relational and community societal factors. The nine subthemes across micro- to macro-levels comprised six barriers (eg, lack of control over ulceration and treatment, disease fatigue, perceived low threat of consequences, poor patient-practitioner communication, financial concerns, and perceived social stigma) and three enablers (eg, motivation through personalised care, family support, and community social support). The interdependent superordinate themes and subthemes on barriers and enablers of managing DFU embedded in the SEM framework are displayed in Figure 1. …My toe turned black… it's bad control of diabetes! It goes also to the clinic then referred me to hospital then said to chop off the thing. I was not in a good mental place during the time. I did not go to see doctor, even though I'm supposed to. It's self-destructing. I totally like gave up on myself… (Andy). …… they (foot ulcers) come on their own and cannot be prevented! If it (ulcer) wants to come, it will come. If it wants to turn badly, it'll turn out very badly. It cannot be prevented; it's been about 15 years, on and off… I am very worried about my wound if it will get worse, any broken skin. If it relapses, that's very horrible… Sometimes there are blisters… then fluid comes out became a wound, no choice! … (sigh…). (Mary). … we never know when it (ulcer) comes back. I cannot do anything… so many years… the only option was to bring her to see a doctor. I could only rely on the doctor, no choice! (sigh…) (Mary's husband). … because they already thought their wound is becoming the biggest trouble and challenge in their life. I feel like, instead of coping (with it), they are trying to run away from it. (HCP3). …controlling diet made me loss appetite and coming for wound dressing made me feel exhausted! I am very worried that I will give up any time. So I'm now very laid back, do whatever I want! … now is 2 years! I'm losing patience already so you know, I'm like just letting it go… I got no more hope… The most challenging task, activities for self-care is to accept the fact that I need to come back here for wound dressing… (sighs) that is the biggest problem! twice a week, every week. And now it's 2 years! If 2 years that hole cannot heal, I do not see how few months gonna help. Just let it be… (sigh…) (George). Sometimes I feel exhausted but what to do? I am his wife… His wound has been there for so long… it seems no way to heal… (sigh…) It has been many years facing the challenges and living with him with a longstanding wound with many episodes of recurrence. I am already numb and have no high expectations on him. Whatever will happen, will happen… (George's wife). Because sometimes like "oh okay," because nothing happened. I knew I got diabetes, I knew I cannot take sugar. But when I drank coffee with sugar, nothing happened, you know my feet are okay. You know my legs and feet do not give me any problems. When I get new wound, it healed. I always said, nothing one [it's nothing], it's okay to drink coffee with sugar… but now I cannot think like that already… (Tina). "They really do not care! They do not see that this is severe enough. His toe already turned to gangrene and the whole foot become swollen and gangrenous… he does not know what's the priority in their life… the foot already like this but still taking a risk and want to go home to pack their things first instead of going to hospital (emergency department) instantly… (HCP3). I'm just hoping that the same wound nurse can continue to dress my wound and motivate me … The way she works, she wants to make me live. So it makes me very embarrassed that I do not want to live. So if I do not help myself, I'm gonna give her more work. Yes! That's the word, guilty! (George). I think, instead of pouring more resources into like blanket education, maybe we can look into how we impart that education on self-care… perhaps targeting it and individualising it to that patient. And then harmonising that with what the patient is passionate and motivated about… (HCP6). I just wanted to hear that "hey, your wound is improving!"… I guess the positive outlook helps us a lot. …that totally like elevates you from distress. You would not think too negatively, you would not think so depressing, it's like, at least you know it's improving, you'll survive! … at least, it helped me lift up a bit. So, it's still hope! It's just stick to your strict control of diet control or all these things, there's still hope… (George). … a senior consultant using words like "I hope you get better"! If you hope I get better, then I'm a dead duck. Then she said "why?" You are the doctor, you do not hope I get better, you should make me better!! You know, if you hope then what's left of me? Since then, I've stopped seeing doctors for my diabetes (angry face) …I feel that doctors should take a course in how to talk to patients! (George). … When you talk to your patient, you must touch their heart! If you touch their heart, they will let you know everything. Being patient and showing empathy, you do not need to ask, they will tell you all their story. If you nurse or doctor, do not understand your patients, it's very hard for you to communicate with your patients and have them listen to your advice! (Steve). …there's very little time allocated to see the patients and we do not have sufficient time to evaluate what's happening to the patients… I wish I can do all these on my own and then follow-up on the same patient but…logistically it's not easy because of limited consultation time per patient. Overall, not enough time has been put in for care of patients with diabetic foot ulcers (HCP5). (off-loading) shoes are expensive $200! What is this?! … I do not understand why they are expensive! Those are basic needs for self-care and should be subsidised! The problem is money… (Tan) …Once they found out the price of the off-loading shoes, they got a shock. And then they said… "Oh, maybe this is less priority." They pushed this part (footwear advice) backwards… (HCP8). I used to wear high heels. Then suddenly I need to change everything. So like, all of a sudden. The doctor advised me, must wear this shoe, recommended this shoe. To me like, "must I wear this? So ugly!" when people look at my shoes, putting away all my shame is not easy… (Tina). I feel diabetes very shameful, "you got diabetes!" You know that kind comments. Diabetes so what? I know my life sucks… I think self-care all these things are like need help from society. It does not help that it's like society treats diabetics like, you go outside, and diabetes is like ostracised and all these things. Because I'm fat. Since I was young I was this size, I was ostracised all the time. It is tough and will take a long time for me to like, do not care about opinions from other people…" (Andy). I had a problem to reach my foot for daily check-up. My husband helped me take photos of the bottom of my foot and toes and show me the photos for me to check on my foot for any cuts or wounds (Mary). Reminding her to take medication and her insulin jabs every morning, helping her to take photos of her foot to let her inspect her foot daily… those are my daily routine and I am like her family doctor… she needs my help and emotional support towards her health and self-care (laugh) … (Mary's husband). …we got plenty of education resources from government and society, newspapers, also TV programs, internet and everything to show us what is diabetes and complications like diabetic foot and how to take care of them. We also got free diabetes health screening in our community…" (Steve). …healthy living becoming a norm in society … Suddenly I see a lot of people asking for all these (sugar-free drinks). So I know Singapore is becoming a health conscious country already! Same to the foot self-care… the feet are the most important thing, so wearing shoes is safer, much safer" (Rahim). The recognition of the challenges related to diabetes care has led to the widespread implementation of various support programmes for patients. While these programmes have generally been effective and acceptable by patients,52 the rates of adherence to foot care remain suboptimal and foot care is still not sufficiently prioritised by patients despite the serious repercussions.9, 15 Most importantly, despite the availability of specialised diabetes care for DFU in primary care in Singapore and other settings, and the timely identification and treatment of individuals with DFU in the community, the incidence of diabetes-related amputation caused by DFU remains alarmingly high.53 To better understand the barriers faced by patients with DFU, this study combined interview data from patients, family caregivers, and HCPs to delineate the barriers faced by patients with DFU so as to identify actionable targets for refinement of existing services and the development of DFU specific interventions in the primary care settings. Our study findings indicated that perceptual and emotional processes namely the interplay of low perceptions of control, low perceived threat, and disease fatigue hindered patients' DFU management by triggering emotional and physical exhaustion and low motivation to adopt DFU self-care recommendations. Many of the study participants had prior DFU experience with a prolonged journey of DFU care and reported a low perception of control over ulceration and treatment outcomes. Similar to prior work,20-22, 36 our participants reported low personal control over ulceration and treatment outcomes. They felt that ulcers were unpredictable and uncontrollable, and recounted their personal or indirect/vicarious experiences of multiple episodes of re-ulceration and/or amputation. The persistent wounds and their poor outcomes fuelled low control perceptions and adversely affected emotional and physical well-being and demotivated their adherence to treatment. Emotional distress and emotional vulnerability were reported which further eroded motivation towards treatment. Most notable was however the link between low control to disengagement from treatment, such as low foot self-care behaviours,20, 36 which is consistently related to poor prognosis including survival.21 The struggle of regaining control after amputation has been highlighted in recent qualitative work.54 The intensive and prolonged treatment protocols for DFUs, and the slow healing rate of DFUs not only fuelled low control perceptions but also triggered disease fatigue. Disease fatigue was vividly discussed by all participants, especially among those with plantar/trans-metatarsal head ulcer(s) with prolonged wound healing and multiple recurrence/re-amputations requiring long-term wound care. Fatigue has been studied extensively in the context of chronic diseases55 like diabetes,56 and more recently in coronavirus infection.57 It was thought to comprise of physical, cognitive, and emotional aspects but it is not well understood in relation to DFU. Study findings indicated that disease fatigue was more than physical experience and symptoms and included cognitive and emotional exhaustion with DFU that dampened patients' motivation towards self-management and foot care. It is of note that although most study participants had a prior history of DFU and/or direct /indirect experience(s) of amputation, the majority of those interviewed reported low perceived threat (eg, severity and/or susceptibility) for the serious complications of DFU which undermined foot self-care as repeatedly shown in previous studies.14, 20, 36, 37 It is possible that patients with DFU who typically have multiple comorbidities or even end-stage kidney disease may not view DFU as threatening as other DM complications. As noted by qualitative review, patients often view amputation as a rare DM complication and do not consider wounds as a major cause of concern.18 Besides individual beliefs and perceptions, interpersonal and system factors were also important. Poor patient-practitioner communication and strained interactions as shared by the study participants discouraged treatment adherence. The importance of empathetic communication and forming emotional connections/rapport with HCP teams have been identified by a recent qualitative meta-synthesis review18 as critical for fostering a sense of trust and motivation towards treatment. HCP participants in our study also recognised the value of good communication but often felt disempowered by time constraints.48, 58 Another interpersonal barrier to DFU care was the perceived stigma, especially with regard to specialised footwear and appearance.1, 52, 53 Patient participants felt embarrassed and worried about being judged for their appearance with customised therapeutic footwear and often chose not to follow the footwear advice increasing the risk for poor healing and re-ulceration. Financial constraints were also noted as costs33, 48, 49, 59 related to footwear and transport for foot treatment hinder treatment adherence. While strained interactions hindered adherence, personalised care emerged as a key enabler. Patients reported that personalised wound care consultations made them feel motivated towards treatment through personalised care. Patients especially noted that seeing the same HCP (eg, wound care nurse) was not only for wound care but also getting personalised support/motivation from the attending HCP to encourage/empower them to live well with their chronic foot conditions. Personalised care approach is the key to the chronic care model and personalised care planning refers to the negotiated discussion (or series of discussions) between a patient and an HCP to clarify goals, options, and preferences to develop an agreed plan of action based on the mutual understanding for self-management impr